Some background: It was the end of my sophomore year of college. I decided I wanted to commit my summer to writing music in the basement of my house in Newton, but I couldn't do that because then I'd have no money. And then one day in April, I saw a flyer on a wall in Harvard Square, and all my problems were solved.
The flyer advertised an opportunity to be a subject in a sleep study that was being done by Harvard Medical School. It was a 12-day commitment, and paid $3,500. I immediately dialed the number, and made an appointment. A few days later, after they deemed that I fit the bill, I was told that for the 3 weeks prior to the study, I'd have to sleep the same 8 hours every night, and cease my consumption of alcohol and caffeine. They gave me a watch to wear during these three weeks that monitored my movement. The second night into this period, I had to pull one of my 80 college all-nighters to write a paper due the next day, so I put the watch on my desk, and moved it periodically to imitate the movement that would happen if I were sleeping. The next morning, they called me and told me they could clearly see that I hadn't slept the night before, and that if I cheated again, I would not be able to do the study. The fucking watch knew (they later told me that they also could tell when someone was watching a movie, eating at a restaurant, driving, and doing a lot of other normal activities by looking at predictable patterns of movement transmitted by the watch).
Anyway eventually, May 25, 2002 rolled around, school finished, and I headed in for the study. A few things to keep in mind as you're reading the journal:
-It was an asthma-related study, which explains all of the breathing crap.
-I was the only subject (they do them one at a time), and I spent the entire 12 days in the same room. The room had no windows, and I was without a watch, internet, TV, or anything else that would let me know the day or the time. So I never knew if it was day or night outside, or how many days I had been in there, or how many I had left. This explains the word "maybe" before the dates I write.
-I had no idea about this at the time, but I learned after the study that the whole time I was on a 28-hour day-- 19-hour days, 9-hour nights. This seems like a small detail. It's not. Humans are programmed to be on a 24-25-hour cycle. When that changes, it really fucks with your system. So as the days went on, the outside day began to separate from my "day". As this happens, I become increasingly irritable and insane. By the end, my days are aligned again with the outside days (although I had lived one fewer day than the outside world) and I somewhat regain my patience. However, I seem to grow more insane as the study wears on.
-Finally, when you're reading the journal and wondering why the hell I did this, remember that doing so allowed me to fuck around all summer and take a solo trip to Asia in August. So it's at least debatable whether it was worth doing. Of course it goes without saying that I will never do anything like this again.
Anyway, enjoy the journal. Save it for a moment of severe boredom, or dire procrastination. And if, by chance, you're looking up at the night sky during the next two and a half months, and you peer upon a star, know that maybe-- just maybe-- I'm also peering at that very star. Till August--
Sleep Study Journal
May 25 - June 5, 2002
May 25 - June 5, 2002
Maybe 12pm Sunday 5/26—day 2 of 13
I got here yesterday at 6 and moved my piano and other luggage in by 7. I met a bunch of people as they came in. Then a lady with a beard put an IV in my arm, which wasn’t a problem (she wrapped it again and again, each time more substantially—this was very satisfying, in the same way unwrapping a babybel cheese is extremely satisfying). The asthma staff consists of Sally, Sean, Max, Mike and Tim. I had worked with Sally before and had met Sean. I will spend most of my time with these people, although I’ll be “worked on” by dozens of others. Sean was the one working with me yesterday.
I was pretty excited when I got into my room. It’s pretty big, maybe 15 x 18 x 8 or so. There is a bed that moves although I was devastated to find that I wasn’t allowed to move it—they make me sit up and recline when they damn well please. There is a desk, a closet, a little TV (for movies not television—and there are no rated R movies allowed because apparently R-rated movies fuck with people's blood pressure—I’m basically going to watch the Indiana Jones trilogy and Mulan a bunch of times). There is a bathroom, but no lights, so I have to prop open the door to be able to see in the bathroom. There are two cameras which cover almost the whole room, but not the bathroom, and a microphone, so someone is always watching me and they can always hear me.
After the IV, I was told that it was time to put in the dreaded rectal thermometer (“the sensor” is their euphemism for that). I was told to insert it up to the tape. Devastation struck as I saw that the tape was FOUR inches up the wire (which was wider than a coffee straw, less wide than a normal straw). This was not pleasant. Thankfully, once it was in, I didn’t feel it really (although sitting down is always a cute reminder).
Then I got dinner which was peas and mashed potatoes and dry chicken. Thank God I’m not a picky eater—I ate all the food (the rule is that I have to eat and drink everything they give me, including condiments, etc.). While I ate, the guy in charge, Mike, told me about the study—Mike is a really friendly, funny guy with a Scottish accent—I'm thrilled with him and like him more than most of my friends. Then one of the other guys Sean (a weird dude) came in and stuck a bunch of sticky pads to my torso and snapped wires onto the pads. Then he put big elastic bands around my chest and stomach—then a nurse came in and was smily and attractive and attached electrodes to my head. I kept trying to make her laugh and was only successful once when I said, “this is romantic” as she scrubbed my scalp and measured my skull circumference.
At this point I have about 30 wires running from my body and they put on finger clips and a “mustache electrode” and tell me to go to sleep—I would guess it’s about 2am when the lights went out—pitch black. I slept alright—I was awake for an hour or so combined throughout what I would guess was about 5 or 6 total hours. I awoke to the an alarm and it then went from pitch black to standing in the middle of the sun bright. I was like tim robbins when the door from his solitary confinement opens and the light pours in.
Then Max came in (I like this guy—he’s much cooler than weird-ass Sean)—I went through the routine which they call the “short cycle.” It consists of about 5 computer exercises, where I tell how I feel, and some reflex and reaction games, which are fun, and timed double-digit addition, which can be stressful—then there are 5 lung exercises, where I blow into the things with nose-clips (I despise the nose-clips) and a neck brace. Then I had breakfast. Breakfast was tragic. Two little boxes of raisin bran, and a carton of milk, two cans of pineapple juice and two large containers of water. I finished the raisin bran in 2 seconds, was still hungry, not at all thirsty, and all I had left was about 6 gallons of liquid to force down. I drank more water than I ever had before.
Then came shower time—shower time is great and when I say great I mean horrible. They spent awhile taking any electrodes off and then I had to go in the bathroom and remove “the sensor.” This was equally as not pleasant as putting it in. After that I got in the shower and went through excruciating pain as I pulled each stickypad off, and with it all the hair on my body. After this they put everything back on and I do a short cycle. At this point max and I are very close friends. Then I pissed a quart. And then I pissed 16 times in 2 hours.
I am starving after playing the piano for awhile, a nurse came in and said, “It’s great hearing the piano.” After giving her the charmingest smile I could muster, I realized then that the microphone picks up everything and half a dozen people always hear everything I play. That’s okay, but I realized I won’t write much music or experiment much because I will always feel the pressure to play something entertaining, so that's too bad.
Enter attractive nurse. Charming a nurse while being a subject is difficult. Everything was going great with her when she said, “oh, when you need to make a bowel movement, just press this button and I’ll come unhook you.” This was very upsetting. At this point I was so hungry I wanted to eat my knees but I didn’t want to be “that subject” so I didn’t say anything. Instead I started the book John Adams, which I want to get through while I’m here (I’m realizing that I don’t have long blocks of free time and won’t be able to read that much. Another nurse was in here and I mentioned that I was going to watch the Celtics-Nets series on tape but that I didn't want to know what happened, at which point she made a weird face. I said, “what does that face mean??” She said, “Let’s just say last night’s game (game 5) was interesting” and she left. Fuck that. What an annoying thing to say.
Finally lunch came. Starving, I finished my spoon of tuna salad, 3 potato chips, and 2 spoons of soup in 8 seconds. Still starving, I stared at 14 gallons of water and lemonade that was the rest of my lunch. I am currently procrastinating from drinking the last container of water. I piss more than I blink. Oh yeah that reminds me, yesterday I had to piss so the hot nurse brought me my urine container and said “I’ll go outside, holler when you’re finished and I’ll come get it.” I pulled an Andrew and had stage fright. I stood there trying to piss for 3 minutes, when she finally said, “um…are you done?” In miserable embarrassment I said, voice cracking, “no.” It took 5 minutes to happen.
Maybe Sunday 5/26, 8:30pm, Day 2 of 13
I was starving all day. Finally I ate my spaghetti and meatballs in 4 seconds for dinner and drank 88 gallons of water. Productive day though of reading John Adams, playing Super Mario Lost Levels, and watching the first half of Indiana Jones, Raiders of the lost ark. Got to know Mike the Scottish guy better—I love that guy—he agreed to write down times I thought it was and the real time and date next to my guess throughout the time here. Whoa-- suddenly now, they're telling me it’s bedtime. Who knew?
Maybe Monday 5/27 3:30pm, Day 3 of 13
This morning I awoke and the lights barely came on—I found out later that these dim lights were all that I was going to have for the next 11 days—my time of a lit room is over. I can still read, but it’s hard. Today I worked with a guy named Tim. He’s another one of the 5 people I will be with on a regular basis. I liked him too. I’m trying to figure out if I’m in some kind of routine, by writing down events. My log today:
-short cycle (20 minutes)
-long cycle (an hour+ of breathing in different conditions—this is boring as all hell)
-new IV tube—the idiot nurse accidentally took the needle out when she only meant to replace the tube, so I had to get pricked again—she kept apologizing and I wanted to kick her in the ugly teeth.
-electrodes off—this is the process where I tear off all of my body hair every morning. Between the tape and electrodes, it’s as if every morning I tear off 25 bandaids. I seem to be getting used to this. I just accept that this is a fairly painful study and suck it up. Plus I want the hot nurses to think I’m tough.
-shower (note of good news: I barely notice my rectal thermometer anymore. However, every morning after the shower, putting it back in is quite upsetting.)
-what I would estimate to be 1:00 of free time and lunch.
-about 2 hrs of free time
-electrodes on, dinner
-this study is irritating
-I've been told that at some point I will undergo the “constant routine” when I will stay awake, in bed for 45-60 straight hours.
-it’s pretty fucking dark in here
-thank the lord that I like most of the staff
-good news- I’m eating ridiculously healthy
-bad news- the food is dreadful, I’m getting chinese food 898 times the day I get out.
-I can’t believe the sox are playing every night and the celtics-nets series is going on and I don’t know what’s happening.
Maybe 8:30pm Monday 5/27 day 3/13
During a long cycle just now, while I breathed with a mask on and simultaneously found 3’s and 5’s in a string of numbers on a computer screen (to distract me from my breathing), I decided I think I want to work at my old sleep-away camp the summer after junior year. I may decide this is a horrible idea after I leave the study. There is this one nurse is the most annoying lady in the world and I hate her. She only makes conversation when I absolutely don’t feel like talking.
Maybe 10am, maybe Tuesday 5/28, day 4 of 13
I am becoming increasingly irritable. Up to now I’ve felt pretty pleasant and I’ve acted pleasant, patient, and polite. This is become harder to do. I go in waves. Right now I just got out of the shower and am only connected to two wires and feel fine, but if in the first few days I was irritable 10% of the time, it’s up to about 65% right now. Part of this is that last night they woke me up twice to do 30 minutes of breathing exercises. Then my finger clip started buzzing and I woke up a third time and couldn’t fall back to sleep. Every night from now on, I will be woken up twice—this increases irritability.
Since there are no big important things in here (although I’ve spent much time thinking about people in my life while here), the little things become very important. I got a bag of spices yesterday to put on my food and it absolutely thrilled me—likewise, I become enraged at things like malfunctioning machines, people who are not funny and/or talk too much and incompetence of a staff-member. Speaking of the staff, two nurses have become very important to me. Kara, the one with the southern accent and blond ponytail, I am deeply in love with and will propose to her before the end of this study, and Angela, who is smily and flirty and laughs at my jokes. MAX, on the other hand, I liked at the beginning, but it turns out he is from Delaware and acts like it, and has begun to annoy the hell out of me. Other things: -I did 30 illegal push-ups today in the shower, the one place they can't see me. I have no idea how long my days are and as a result I have no idea what the date is.
Maybe 3pm, day 5 of 13, Wednesday, 5/29
This morning the nurse dropped my omelet on the ground when bringing my breakfast. She said she’d bring a new one, but she never did. I can't possibly express how much this upset me. I’m exhausted because I was up for 3 hours last night.
Maybe Day 6 of 13, Thursday, 5/30 6pm
I’ve had insomnia problems. The past 3 nights when they’ve woken me up for lung function testing in the middle of the night, I have not been able to go back to sleep and have lay in bed for 3 hours. I spend much of that time analyzing in detail every person remotely close to me in my life. To try to clear my mind and fall asleep, I tried counting sheep—I had never tried this before, and now I know why—the sheep were jumping a fence, one by one, when an overweight sheep couldn’t make the leap and cracked his chin on the fence—abashed, he scurried away—this made me laugh and more awake. Then I started thinking about how much it sucks for sheep when they’re stripped of their wool—I pictured a bare sheep shivering, saying “I’m oh so cold without my wool”—finally, the sheep began to remind me of goats, which is funny in itself, so the counting sheep tactic failed miserably.
Max came in today, and I hadn’t seen him for a few days—I think he was surprised at my newfound surliness—I was much less friendly to him. Out of the 5 asthma staff, he and Sally are the ones that can’t just sit in silence—they always have to be cracking idiotic jokes or making excruciating smalltalk—for this reason, in my new grumpy state, I’ve grown to despise both of them. Since I can’t act cold towards them, I’ve taken to violently lashing out in my head. For example, there is a moron nurse who is constantly screwing things up, and this is infuriating, so in my head, I’ll scream things like, “You hideous fool!!” This is remarkably effective.
Maybe day 7 or 13, Friday, 5/31/02
They brought in my laptop this morning, after the week it took for the technician to disable the time. When I turned it on, Bonzi, the little purple monkey on my desktop, who I’ve been down on for months now, appeared. I have never been so happy to see anyone. He was the first person from my old life I have seen in a week and I commanded him to tell me jokes and amazing facts for quite some time.
--I finished the Indiana Jones series yesterday. “The Temple of Doom” is blatantly the black sheep of that trilogy.
--Staff member Tim made the jackass move of telling me the Celtics Nets series is still going on yesterday, so now I know that it goes to at least game six. I am so excited to watch this series.
--Last night I was awoken twice in the middle of the night for lung function testing as usual, by Delaware Max. He knows that I have not been able to fall asleep after the second of these tests, yet still insisted on making conversation with me. I was literally lying there, comatose on the bed trying not to arouse my brain too much, and he says, “So, what are you planning on doing once you graduate?” I was livid. The fact that I despise him and hope he dies is becoming a point of tension in our relationship.
--And yet again, I did not fall asleep. However, at this point I’ve come to accept constant fatigue and don’t expect to sleep, so when the night ended, fucking weird Sean and the nurses found me in a state of chipper alacrity. I’m all about mixed messages here—one day I’ll be unbelievably grumpy all day, and yet I am prone to spontaneously bursts of extroverted happiness. This morning I was cracking jokes left and right. Then Kara, the southern blond nurse, came in and stole my heart yet again. I found out she is from new Jersey this morning, though, and this hurt a lot. Even so, she is a very, very special girl. I would give all my limbs for her.
--Mike, the staff member in charge, is from Australia (I asked if he was from Scotland—this was very embarrassing.)
--I’ve thought about my past, present, and future life more in the last week than I did all year. I’ve spent dozens of hours evaluating decisions I’ve made and every sort of relationship I’ve ever been a part of. This has been very therapeutic, but I am beginning to get sick of my own mind.
Maybe day 9 (Somewhere between day 8 and day 10—it fucking better not be day 8)
--This is two days after my last entry, but I’m as disoriented as ever. I opened Microsoft Outlook on my computer, just in case I could learn the date, and it said June 1. by counting the nights, I had assumed it was day 7, 5/31, but this told me it was day 8, 6/1, that my days have been longer than real days. I was so happy I almost cried. However, yesterday, I checked again, and again it said 6/1, not 6/2. My stomach sank. Today, two days later, it still says 6/1. Whoever did this is cruel—6/1 can’t be the default date, but why the fuck would it be locked one day after the date I thought it was-- the one day that would have excited me. I now have no idea what day it is. By counting the nights I would say it’s Sunday, 6/2, day 9, but I could be off by one or even two days, in either direction. Bonzi is annoying me.
--There has been a turn for the better. The last two nights I’ve had no insomnia, and have been much less moody and much less irritable. I reconciled with Sally and Max, and have been very friendly to them.
--I have a full beard and moustache—I am hideous—I don’t care.
--I wrote a jazzy song yesterday and labeled it “Asthma Jazz”
--I beat Super Mario, The Lost Levels—this was extremely difficult and satisfying.
Maybe day 9, later
--At this point I don’t even remember what my friends or family or the sun looks like. ALL I know is the asthma staff and this room. The only person I know better than the asthma staff is John Adams—him and his wife, Abigail. I know them extremely well. This room is my entire world. I HAVE BEEN IN THIS DARK ROOM FOR 9 DAYS. Also, most of my dreams now are confined to this study and take place in this room.
Also I’m acting abnormally some of the time. Normally when I’m moody at least I am in one mood at a given time. Now, my moods are becoming strange. I’ll be in a pleasant, fine mood, and something will happen that will make me furious. Yesterday, out of nowhere, I punched the wall hard. Or I can be in a horrible, irritable mood, but also be slaphappy. Likewise, I’ll have times when I’ll think about something one of my friends or family has done and I’ll be enraged at them, and other times I'll be thrilled with everybody or miss people intensely and will be emotional and nostalgic. This makes me better understand why the people on Survivor get so emotional when they see their family. It’s a very different situation, but the idea of seeing someone I know right now is unreal and thrilling.
What I believe to be Monday, 6/3/02
I woke up this morning and was told that today (and tomorrow) is “constant routine.” The dreaded constant routine. This means I will not get out of bed, or even sit up (I am reclining) for the next 45-60 hours. During this time I will be doing dozens of long cycles. So far, I’ve had one long cycle (long cycle is about an hour and a half—computer tests, 1 hr of breathing with mask, 5 shorter breathing exercises). I’ve been awake for about 2-3 hours so far.
The constant routine will consist of long cycles and short breaks in between the cycles. During the “breaks” all I can do is read, or talk to the hospital staff member who is currently in charge of keeping me awake. JESUS. They just told me it’s time now for another long cycle, and it’s only been a half hour since the last one.
1 hour later-
Continuing—I finished my second long cycle of the day—I would estimate this to be hour 4 of 45-60. I was so upset at the end of the last entry because my break was shorter than expected, and that was the length that all my breaks will be throughout. During each free period, still in bed, I am instructed to eat the same exact snack, which I must finish--two bite size tuna sandwiches, half cup of apple juice and half a cup of water—not bad, if I may say so myself. I now am pretty sure today is Monday, day 10, because yesterday Tim accidentally told me LA beat Sacramento in 7 games, which means yesterday had to be at least Sunday, because game 7 was Saturday. That reminds me that I’m so excited to watch the Celtics series. On a different note, things that infuriate me about Max:
--his praise is superfluous, constantly saying, “wow! Fantastic job on that test” or “you’re doing great.” This is SO ANNOYING.
--he is constantly saying “Is everything alright?, are you okay?”—I’M FINE.
--every time he comes in the room he says, “what up, G?” or “whazzup homey?”
--he makes conversation during my nocturnal awakenings.
--when I’m in a good mood, I would go so far as to say I enjoy his company, but when I’m in a bad mood or irritable, he is despicable.
Note: I really can’t move at all during this routine—I was just told I have to stay on my back and keep my legs straight.
Maybe hour 8, 4 long cycles finished-
This is getting real old real fast.
Maybe hour 10, 5 long cycles done-
I’m developing a rash on my stomach from the metal clip on the elastic band.
Maybe hour 16, 8 long cycles done-
Constant routine is by far the worst part of this study—I am already fighting off sleep, and I have at least 30 hours left—pulling an all-nighter is much harder when you have to be lying in bed THE WHOLE TIME and doing mindless breathing exercises 3/4 of the time. The staff members are in here during my breaks talking to me to try to keep me awake and the last thing I want to be doing now is talking to them.
Maybe hour 17, 9 long cycles done-
I’ve made some bad decisions in my time. Picking tuna as my choice of sandwich—the same sandwich I have once every hour and a half for 45 hours—has got to be the worst decision I’ve ever made.
Maybe hour 18-20, 10 long cycles finished-
I am currently in the midst of a tragic Sheet-Music Nazi lecture. Her name is Erika—I call her the Sheet-Music Nazi because every time I play something on the piano, she says, “Oh! You’ll have to lend me the sheet music to that song.” I explain that I don’t normally use sheet music, but to no avail. She will continue to ask me for sheet music dozens of times. Right now I’m on 30-minute-break #11—she is my “make sure I stay awake” supervisor for this one—the tragic lecture is her blabbering on about some dyke story about 80’s music and/or sheet music—I’m not joking when I say that she is talking as I write this—all I want is to read in peace and for her to get AIDS.
Maybe hour 26, 13 long cycles done-
Maybe hour 28, 14 longs cycles done-
I just lamented to two nurses about eating big chunks of tough, dry tuna every hour and a half, and they couldn't get enough of it. They were rolling around the ground, chortling with glee. I'm glad someone is enjoying this.
Maybe hour 35, 17 long cycles done-
I am officially traumatized towards tuna fish—like Eliah with chicken wings after Hooters or Andrew with Newtonville Pizza after they put onions on his sub. I will never eat tunafish again. I have been in this bed since Sunday night and I think it’s Tuesday night now—I am experiencing the end of what was a pleasant second wind.
Apparently hour 45-60, 18 long cycles done-
I’M DONE. I have underestimated time throughout this, because it’s been at least 45 hours and it’s OVER. I can go to sleep! This is the happiest I’ve been since the Superbowl!
Hopefully Wednesday, 6/5 @ 9am—Day 12
I just slept for probably 9 or 10 hours. If today is Wednesday, I have not set foot off this bed since Sunday night. Tomorrow, if my predictions are correct, I LEAVE. It’s all uphill from here. The day I arrived here seems like months ago. I really can’t imagine seeing anyone I know right now.
--5 minutes later—
Here’s a piece of interesting news: it’s all over—they just told me it’s Thursday at 2pm. I’m done. This is the best moment of my life.
I’m packing up and waiting to be discharged. I can’t believe it’s all over. I just got the rundown of everything that happened over the last 12 days. Apparently I was on a 28 hour cycle the whole time, awake for 19 hours and asleep for 9 every “day.” So each consecutive day, my hours were four real hours later than the day before, which means my night shifted later and later until it hit the next night, hence the missing day in my accounts. It also was explained that the reason I had insomnia for some of the middle days is that those days I was sleeping when it was daytime outside, and though there were no windows and I didn’t know it was daytime, my circadian rhythm (biological clock) "knew" and my sleep was much lighter during those “nights.” The constant routine lasted 46 hours, so I was almost 10 hours off. They turned the lights on a few minutes ago, and after I got over the shock of the sheer brightness, everyone and everything looked fake, like Claymation, and really really colorful, after 12 days of dim lights. I weigh 15 pounds less than when I went in, apparently mainly because my water-weight is down due to low sodium content in my diet. I’m unbelievably excited to live in the real world again. I am in a phenomenal mood.